Riding The Waves

We are learning more and more each day. This week we've learned the true meaning of ups and downs, of this rollercoaster ride they keep telling us we are on.

We arrived back in town Monday night anxious to see the babies. We knew Chase was struggling while we were in KW so we couldnt wait to get back in to see him. When we finally got into the unit, we learned that Reilly too was having her own trouble. Chase was okay but Reilly was having a hard time breathing. We were so exhausted from the day, that the sirens and dingers seemed louder and more annoying than ever.

The doctor came to talk to us about Reilly. He explained that Reilly's lungs were struggling and that from here on out it would not be an easy road. No doubt. But he put it in perspective for us when he said that we are not at the bottom of a steady incline, slowly making our way up. We are riding the waves. We will have good days, and bad days. Monday was definitely a bad day. We were so overwhelemed we didnt stay long, but Reilly's struggle continued well through the night. She needed a blood transfusion and her oxygen requirements were so high they were worried. When we made our way back into the unit on Tuesday morning, things werent much better. They were trying new things, put her on a new ventilator, changed her pressues and were hoping she would show signs of recovery throughout the day.

What we are learning is that there are no quick fixes. They cant change something and magically the babies do better. It is trial and error and it is slow. We had a hard time being in there yesterday.  We found ourselves wondering where our strength would come from. How strong can two people be? How can we be strong and positive when everytime we go into the NICU we get bad news? Needless to say we both felt defeated. As the day progressed, both babies slowly started to stabilize. We hugged our phones throughout the night and prayed for a better day today.

This morning, both babies had their primary nurses which brings us such comfort. Their primary nurses know them, becuase they are assigned to Chase or Reilly every shift they work. Reilly has a wonderful nurse who gives her so much love and cares so much about her. Chase is blessed with 2 lovely primary nurses who know him. They know what he likes and what helps him settle. After the two "bad" days, we were so happy to see their primaries. They both had better days today! Chase's oxygen requirements had come down and Reilly was showing signs that the new ventilator was helping her little lungs. Chase's feedings were increased to 4mls every 2 hours (what a pig!!) and best of all, he had a poop! Reilly just started feeding again after the blood transfusion but we know she will catch up quick.

After the bad days, it was so nice to have a good day. We realize that our strength comes from these small steps forward: increase in feeds, lower oxygen, calm, sleeping babies, no spells, etc. We have to focus on the progress they make, the strength we have together and the reality that there will be bad days. Hopefully, though, for every bad day there are two good days and that there are more steps forward then there are back.

We realized this week that our road is long. We also realized how much we are loved, how many prayers are being said for our family and just how lucky we are. We have been so overwhelmed by the love and support everyone has sent us:  gas cards, grocery money, beautiful words and cards, flowers, messages, restuarant certificates, beautiful baby items, and most importantly your thoughts. We have been so touched by everyone's generosity through all of this. We know you are all thinking of us, praying for us and sending us all your positivity and we really appreciate it. We love that you are reading the blog, helps us feel more connected. Hopefully we will have more pictures soon! Thanks again to everyone, we are forever grateful.

xo Sio & Ad